Our October Issue: Disability And Health

More than thirty years after the Americans with Disabilities Act (ADA) was signed into law, people with disabilities continue to face inequities in the health care system.

The October issue of Health Affairs was supported by the Ford Foundation, the Robert Wood Johnson Foundation, and the John D. and Catherine C. MacArthur Foundation.

Featured articles highlighted and described below:

Transgender adults have higher rates of disability.

Transgender adults have a 27 percent chance of having at least one disability at age twenty, increasing to a 39 percent chance at age fifty-five—nearly twice the rate of their cisgender counterparts at both ages—according to a new study published in Health Affairs. Overall, transgender adults reported higher rates of disability (30 percent) compared with cisgender women (24 percent) and cisgender men (18 percent), which includes difficulty walking or climbing stairs, dressing or bathing, running errands alone, concentrating, remembering, or making decisions. “Compared to cisgender respondents, transgender adults were more likely to be a sexual minority, a racial minority, and have a lower income,” says Madeline Smith-Johnson of Rice University. “The experience of discrimination, victimization, and violence brings chronic stress to transgender populations, which can accumulate in negative health outcomes.”

Rural people with disabilities have less access to personal care aides.

Residents of rural areas in the United States have a higher percentage of disabilities that require help with personal care, but fewer people who provide such care, new research shows. Adults with self-care disabilities—disabilities requiring help dressing, bathing, or getting around inside the home—range from 3.9 percent to 8.7 percent across the US, concentrated in the south and southeast. These areas also have the lowest number of personal care aids, according to a new Health Affairs study. Researchers point to long-standing challenges in recruiting personal aides in rural communities, including low wages, travel time between clients, limited or a lack of employment benefits, unpredictable schedules, and an isolating work environment as contributing factors. “Personal care aides are especially critical to the health, safety, and community engagement of adults with one or more self-care disabilities,” says Susan Chapman of the University of California, San Francisco. “Given the current state of the personal care aide workforce, exacerbated by the COVID-19 pandemic, and the decreasing population of working-age people in rural areas, policy makers and home care service providers need creative solutions to address the need for services among rural adults with a self-care disability.”

Majority of mental health and substance use facilities fail to provide ASL interpretation.

A study published in the October issue of Health Affairs finds that 41 percent of mental health facilities and 59 percent of substance use treatment facilities receiving public funding were noncompliant with the Affordable Care Act’s mandate to provide accessible communication to patients who were deaf or hard of hearing. “Not only are these patients at a two- to threefold higher risk for mood and anxiety disorders, lifetime trauma exposure, and substance use than the general nondeaf population, American Sign Language users are often not provided access to effective communication in healthcare settings,” says Tyler G. James of the University of Michigan, Ann Arbor. “When patients want to report an inaccessible facility, the grievance process puts the onus on the patient and is layered with additional accessibility issues.”

Clinical trials may unfairly exclude people with disabilities, research suggests.

New research published in the October issue of Health Affairs suggests that clinical trials do not do enough to include and accommodate people with disabilities, counter to federal regulations and research guidelines. Researchers analyzed the eligibility criteria of 97 clinical research protocols for a variety of trials testing the effects of drugs, therapies, or devices in the areas of dementia, depression, diabetes, or lung cancer. They found that the protocol eligibility criteria frequently had language that could serve to exclude people with disabilities, most commonly people who have psychiatric, substance use, HIV or hepatitis, or cognitive or intellectual conditions. Few studies included justifications for these exclusions or descriptions of accommodations that are either provided or permitted. “While the National Institutes of Health have worked to address underrepresentation of diverse populations in clinical research, our findings call attention to people with disabilities…remaining an underrepresented group,” writes Barbara Bierer of Brigham and Women’s Hospital. “One in four adults in the United States has one or more disabilities, so the public health and clinical implications of these exclusions is profound.”

Also of interest in the October issue: